Changes . . .

Having a diagnosis for what was making Faith so ill didn't change the fact that she still suffers from daily pain and nausea, as well as frequent bouts of vomiting. However, finally having a diagnosis of gastroparesis has changed several aspects of her life in drastic ways.

The most obvious of these changes is directly related to the disease itself. We have had to pretty much change the foods Faith eats, how often she eats, and the amount she eats at each "meal". Faith has a pretty severe form of gastroparesis and this means that she has to limit the amount of fats and fiber she ingests because both of these things are extremely hard to digest. Think about being a teenager who is banned from eating hamburgers, french fries, potato chips, donuts, cake, cookies, and the like because your stomach is barely functioning. Most raw  fruits and vegetables are also out, as are all whole wheat and whole grain breads and pastas because they are hard to digest. (Actually, most cooked and canned fruits and vegetables are out because of their fiber content.) Not to mention the fact that you feel totally full after eating just a few bites of food. Of course, the latter is due to the fact that Faith's stomach is struggling to digest the foods she has eaten, so they are becoming stacked at the top of her stomach (which is one of the culprits that leads to her throwing up.)  For Faith, eating now consists of about a cup of low-fat, low fiber food ingested every two hours, unless, of course, she is having a "flare-up" period where she is either vomiting or has severe nausea, then she has clear liquids instead of solid foods. The cup of food is actually a bit less than is recommended, but it seems to be Faith's "magic" number at this time - if she eats more, she gets more nauseated and has more pain. Because of this, Faith has to choose her foods wisely so that she can pack both nutrition and calories into each meal. We are a bit worried because she has lost 6 pounds since her diagnosis less than a month ago, but since her weight falls at the lower end of average for her height, the doctors are taking a "wait and see" approach, hoping that her weight loss will level off as she gets used to the new diet.

A second change for Faith has been the switch from attending public high school to doing her schooling via the home-hospital route. because she has been so sick since February, Faith's attendance at school has been intermittent.  Partly due to the fact that the doctors finally had a diagnosis for what was wrong with her, and partly due to the fact that her school got a new principal this year who decided that it was time to do what is best for Faith, I now help her complete her assignments at home and a teacher from the school district comes for an hour two times a week to administer tests and provide Faith with extra tutoring in math. The benefits of this arrangement come in the form of less stress for Faith. It gives her the chance to learn how to live with gastroparesis without having to deal with the pressures of meeting deadlines set by teachers. The home-hospital schooling situation takes into consideration the fact the students will have bad days in which it will be hard to get out of bed, let alone do their schoolwork. Like many students on home-hospital, Faith has prescriptions for medications she takes when her nausea and/or pain are severe that make her extremely drowsy.   Because of this, due dates for assignments are not set in stone. The student can take an extra day or two to finish work if needed.  One of the biggest drawbacks of this schooling arrangement is that it lacks the social aspects of being able to hang out with your friends before school starts, attend school dances, and the like. I know Faith misses the face-to-face daily interactions with her friends, but thanks to modern technology, she can still talk, text, or chat with them as she feels up to it. She and her friends make plans to get together in person when she feels up to it. Of course, it is our goal to get her back in school as soon as she feels she is ready to do so.

One thing that hasn't changed so far in this process is Faith's genuine enthusiasm for life and positive attitude. She hasn't once asked "why me?"  When people ask her how she is doing, Faith just smiles and tells them that she is "good", even on her really bad days.